The assessment of physical signs in HS is a very complex matter. This qualitative study investigates how patients with HS themselves would rate the severity of different types of HS lesions, and suggests that the lesion severity weighting in currently used Outcome Measurement Instruments, do not match the patient experience of severity.

Abstract Background Hidradenitis suppurativa (HS) is a chronic inflammatory disease of recurrent painful nodules and sinus tracts mainly located in intertriginous skin areas. HS can cause physical and psychosocial impairments, and patients have a need for information and social support. Objectives An educational event was established to accommodate the aforementioned patient needs. The event presents updated information concerning HS and debates the lived experience of HS. This article outlines our approach to patient education. Methods The educational HS‐event has yearly welcomed patients and relatives at Roskilde hospital since 2010—except in year 2020 due to corona‐legislation. The educational content includes information on HS aetiology, epidemiology, treatment, psychosocial aspects of HS and current research. The team of educators is multidisciplinary and includes patients. Results Twelve thematic patient reported questions and concerns reoccur at the events. They include: The aetiology of HS and lifestyle, daily life, employment and economy, emotions, locations of lesions, heredity, comorbidities, self‐care to alleviate symptoms, treatment, the healthcare system, prognosis and new research. The participants are satisfied with the arrangement. Conclusion Educational activities such as the one outlined in this manuscript provides requested information, coping strategies social support. Studies are needed to investigate if systematic education of HS patients improves subjective and objectives measures. Plain abstract Patient education is an important part of disease management. It is essential to share different experiences and practices of patient education to optimize and inspire future educational programs. This study presents a decade of experiences from an annual event that has educated patients with the skin disease Hidradenitis suppurativa (HS). HS is a chronic inflammatory disease that causes skin abscess, nodules, and substantial scarring. The abscesses are extremely painful and located in areas of the body with skin‐to‐skin contact. Due to the painful condition the disease can cause both physical as well as psychological and social difficulties, and the patient group have a need for medical information and social support. In 2010 Roskilde hospital established an annual educational event for patients with HS and their relatives. The educational content includes general information regarding the disease, medical and surgical therapy options, psychosocial aspects of HS, and the latest scientific research concerning HS. The team of educators includes dermatologists, medical and PhD students, experts in psychology, representatives from the HS Patient Association and patients. In this study we outline our approach to patient education for those with HS and their relatives and present the participants' questions and comments as raised at these events. Arrangements such as this can be used to support the patients with the information needed to better understand their disease, but also to facilitate coping strategies and provide a framework for social support. Other studies are needed to investigate if education of patients with HS can improve subjective or objective measures.

Patients with hidradenitis suppurativa experience significant life impact related to their disease. Younger age, Black race, high BMI, active smoking, flares, depression, anxiety, high comorbidity burden, disability, and difficult access to a dermatologist adversely influence life impact related to having hidradenitis suppurativa. Attention to these factors, particularly modifiable ones, may reduce overall impact of disease.

Background Hidradenitis suppurativa (HS) is a chronic inflammatory disease. The HS core outcome set calls for a patient global assessment (PtGA). Objectives To assess the validity, reliability and responsiveness of a candidate single-item PtGA for HS-specific health-related quality of life (HRQoL). Methods Cognitive debriefing interviews were conducted with patients with HS in Denmark and the USA. A cross-sectional observational study was done with adults with HS in the USA and Denmark. Candidate PtGA item, demographic items and multiple patient-reported scales - the Hidradenitis Suppurativa Quality of Life (HiSQOL), Dermatology Life Quality Index (DLQI) and numerical rating scale (NRS) for pain - were concurrently administered to evaluate convergent and known-groups validity. Scales with a single-item assessment of change were readministered 24-72 h later, to evaluate reliability and responsiveness. Results After cognitive debriefing, the candidate PtGA for HS-specific HRQoL was finalized with five response levels. Convergent validity of the PtGA was supported by significant correlations with HiSQOL score [r = 0 center dot 79, 95% confidence interval (CI) 0 center dot 75-0 center dot 82] and DLQI (r = 0 center dot 78, 95% CI 0 center dot 74-0 center dot 82). The PtGA displayed known-groups validity with DLQI score bands based on significance of ananova(P < 0 center dot 001). Good test-retest reliability was supported by the intraclass correlation coefficient (0 center dot 82, 95% CI 0 center dot 78-0 center dot 85) for those who reported stable HS. Responsiveness was assessed by differences in PtGA score against a patient-reported assessment of change, which showed significant differences towards improvement. Conclusions The single-item PtGA exhibits reliability, validity and responsiveness in assessing HS-specific HRQoL in HS, making it a good provisional tool for HS clinical research.

BACKGROUND:Hidradenitis suppurativa (HS) is a chronic and painful skin disease. In addition, HS lesions may be associated with pus and odour, potentially leading to significant stigma and, consequently, greatly affected quality of life (QOL). QOL is a multidimensional construct, which can be measured in various ways. However, generic or dermatologic QOL measures may not capture changes in QOL particularly affected in HS. Accordingly, patients and experts included in the HIdradenitis SuppuraTiva cORe outcomes set International Collaboration (HISTORIC) agreed that future clinical HS trials should measure HS-specific QOL. OBJECTIVES:To develop an HS-specific QOL instrument (HiSQOL, Hidradenitis Suppurativa Quality of life). METHOD:The initial phases of the questionnaire development, described in this study, included item generation by patient interviews, development of a pilot questionnaire, questionnaire refinement, and pilot testing. RESULTS:For item generation, 21 patients were interviewed individually or in focus groups. Analysis of the interviews identified 105 candidate items and, next, a pilot questionnaire was developed. Finally, item reduction and two rounds of pilot testing resulted in a 23-item questionnaire representing physical, psychological, and social QOL dimensions. CONCLUSIONS:We have comprehensively explored on HS's possible effect on the QOL of the affected individuals and identified a 23-item HS-specific QOL questionnaire. The questionnaire proved to be feasible, acceptable, and comprehensible in the second round of pilot testing. With HiSQOL, researchers can measure HS-specific QOL in future clinical trials, potentially enabling them to discover more effective treatment options. It is envisaged, that after thorough validation in a trial setting, a streamlined version of HISQOL may also become available for clinical use in daily practice.

Hidradenitis suppurativa (HS) is a chronic, inflammatory condition that can have a large negative impact on health‐related quality of life (HRQOL). A reliable and validated measure of HS‐specific HRQOL in clinical studies is needed.

Background: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. Objective: To evaluate unmet needs from the perspective of HS patients. Methods: Prospective multinational survey of patients between October 2017 and July 2018. Results: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician >= 5 times. Mean delay in diagnosis was 10.2 6 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital >= 5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. Limitations: Data were self-reported. Patients with more severe disease may have been selected. Conclusion: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address.

BackgroundThere is no consensus on core outcome domains for hidradenitis suppurativa (HS). Heterogeneous outcome measure instruments in clinical trials likely leads to outcome-reporting bias and limits the ability to synthesize evidence. ObjectivesTo achieve global multistakeholder consensus on a core outcome set (COS) of domains regarding what to measure in clinical trials for HS. MethodsSix stakeholder groups participated in a Delphi process that included five anonymous e-Delphi rounds and four face-to-face consensus meetings to reach consensus on the final COS. The aim was for a 1 : 1 ratio of patients to healthcare professionals (HCPs). ResultsA total of 41 patients and 52 HCPs from 19 countries in four continents participated in the consensus process, which yielded a final COS that included five domains: pain, physical signs, HS-specific quality of life, global assessment and progression of course. A sixth domain, symptoms, was highly supported by patients and not by HCPs but is recommended for the core domain set. ConclusionsRoutine adoption of the COS in future HS trials should ensure that core outcomes of importance to both patients and HCPs are collected.

BACKGROUND:Actinic keratosis (AK) is a sun-induced skin lesion that may progress to invasive squamous cell carcinoma of the skin. Recently, the Actinic Keratosis Quality of Life questionnaire (AKQoL) was designed for patients with AK in Denmark as a specific quality of life instrument for AK patients.OBJECTIVE:The objective of this study was to adapt the AKQoL for the German language region of Switzerland and to evaluate its psychometric properties (validity, reliability).METHODS:Translation and cultural adaptation of the questionnaire were assessed by using the technique of cognitive interviewing. During the translation process, 34 patients with AK from the Department of Dermatology, University Hospital Zurich, were interviewed in 3 sessions of cognitive interviewing. The translated questionnaire was then distributed together with the Dermatology Life Quality Index (DLQI) to a second group of 113 patients for validation and reliability testing. Within this group, we measured the internal consistency by the Cronbach coefficient α and Spearman correlation coefficient between the AKQoL and the DLQI.RESULTS:The problems encountered during the translation process led to changes in 5 categories as described by Epstein: stylistic changes, change in breadth, change in actual meaning, change in frequency and time frame, change in intensity. We found a Cronbach α of 0.82, an acceptable internal consistency. The Spearman correlation coefficient between total scores of AKQoL and DLQI was 0.57.CONCLUSION:We culturally adapted and validated a Swiss (German) version of the AKQoL questionnaire applicable for the population of a university center in Switzerland to measure and monitor the quality of life in patients with AK.

化脓性汗腺炎(HS)是一种皮肤症状,会在皮肤褶皱处(腋下、胸下、腹股沟和臀部)引起疼痛的红色肿块。HS可能会被误诊为细菌性脓肿或疮疖,但它并不是由细菌引起的。全球约0.1%到4%的人群受HS困扰。本项研究旨在找出HS临床试验应衡量哪些因素,例如症状(如疼痛、瘙痒)、生理变化(如皮肤发红或肿胀)或对人们生活的影响(如生活质量)。为此,本研究包含了两个组:HS患者和医疗保健服务提供者(医生、制药行业代表和监管代表),并采用在线调查以及面对面谈话的方式来陈述、讨论以及调查,从而收集应包含哪些衡量因素的相关意见。这些代表来自13个国家/地区和四大洲。谈话、讨论和调查的结果表明,至少有70%的HS患者和医疗保健服务提供者建议临床试验包含以下衡量因素:(1)疼痛;(2)因HS导致的生理变化(如发红);(3)特别是因HS而导致的生活质量变化;(4)HS发病期间的变化(如病情发作)(5)全局评级(即考虑所有因素的病情严重程度整体评级)以及(6)其他症状(如疲劳和引流)。这项工作相当重要,因为其中包含了对HS治疗做出贡献的各类人员,包括HS患者、治疗开发或监管人员,以及治疗HS患者的人员。更多的工作还在进行中,这些工作将重点研究HS治疗试验中的衡量因素(以及所用的工具)。

Hidradenitis suppurativa (HS) is a skin condition that causes painful swollen red bumps in the folds of the body (underarms, under breasts, groin, and buttocks). It can be mistaken for bacterial abscess or boils, but HS is not caused by bacteria. HS occurs in about 0.1% to 4% of people worldwide. This study aimed to find out what clinical trials for HS should measure, such as symptoms (e.g. pain, itch), physical changes (e.g. skin redness or swelling), or impact on people's lives (e.g. quality of life). To do this, the study included two groups: people with HS and healthcare providers (physicians, pharmaceutical industry representatives, and regulatory representatives) and conducted online surveys and in-person meetings with presentations and discussions as well as surveys to gather opinions on which measures to include. Thirteen countries and four continents were represented. The result of the meetings, discussions, and surveys showed that at least 70% of the people with HS and healthcare providers recommended that clinical trials include measures of: (1) pain (2) physical changes due to HS (e.g. redness); (3) quality of life changes due to HS specifically; (4) changes in the course of HS (e.g. flare-ups) (5) global rating (i.e. overall rating, considering everything, of the severity of the condition) and (6) other symptoms (fatigue and drainage). This work is important because it included many different types of people who contribute to HS treatment, including the people who have HS, develop or regulate treatments, and treat people with HS. More work is coming and it will focus on how to measure in trials treating HS (what instruments to use).

While hidradenitis suppurativa (HS) severity varies among patients, it is correlated with worsening health related quality of life (HRQOL). Additionally, there is an association between HS and negative psychosocial effects. The objective of this study was to investigate coping strategies used by patients with HS and the associations of the strategies with HRQOL. A cross-sectional survey was issued to patients with HS at four different sites. The survey included a demographics and disease activity scale, the Brief COPE, the Hospital Anxiety and Depression Scale (HADS), and the Dermatology Life Quality Index (DLQI). ANCOVA analyses showed that sex (p = 0.03), depression (p=0.0002), self-reported disease severity (p=0.006) were significantly associated with worsening HRQOL. As avoidant coping methods stood out in this analysis for impacting HRQOL, we created moderation and mediation models to explore this relationship further. No moderation effect was found. Mediation analysis was done using the Sobel test with depression as the independent variable, HRQOL as the dependent variable, and avoidant coping as a potential mediating variable. This analysis showed significant associations in the models both with [c: -0.55 (0.15); p=0.0003] and without [c: -0.85 (0.15); p<0.01] avoidant coping as a mediator, and the indirect pathway (a*b) was also significant [a*b: -0.12 (0.04); p<0.01]. Based on this analysis, HRQOL for patients with HS is significantly associated with self-reported disease severity, sex, depression score, and the use of avoidant coping methods. Additionally, avoidant coping methods partially mediates the association between depression and HRQOL. As coping methods can be learned and altered over time, focusing on coping methods that improve HRQOL may also mitigate the effect of depression symptoms.

BACKGROUND:Until now, there was no validated dermatology-specific health-related quality of life (HRQoL) instrument to be used in youngest patients.OBJECTIVE:To create dermatology-specific proxy instrument for HRQoL assessment in children from birth to 4 years.METHODS:International focus groups, item selection and pilot tests were utilized. In order to avoid the problem of cross-cultural inequivalence, focus group work and pilot tests were planned simultaneously in all national centres of the project. Comprehensibility, clarity, acceptance and internal consistency of new instrument were checked.RESULTS:The title 'Infants and Toddlers Dermatology Quality of Life' was chosen for our new instrument with the proposed acronym 'InToDermQoL'. Focus group work was completed in seven national centres (Croatia, Germany, Greece, Malta, Poland, Romania and Ukraine). A total of 170 families of children with different skin diseases were interviewed, and a pilot version of the instrument was created. Centres from France, Denmark and Spain have joined the project at this stage. Parents of 125 children with skin diseases filled in the pilot versions of the instrument. Good comprehensibility, clarity, acceptance and internal consistency of the InToDermQoL were confirmed. The pilot test results showed that the InToDermQoL questionnaire well differentiates severity-dependent differences. It was also checked and confirmed during the pilot test that no significant information was missed in the questionnaire. Three age-specific versions of the InToDermQoL questionnaire with 10, 12 and 15 items, respectively, were approved for field tests.CONCLUSION:The pilot test results showed that the InToDermQoL questionnaire has good comprehensibility, clarity, acceptance and internal consistency and well differentiates severity-dependent differences. Further validation of the InToDermQoL during international field test will be performed.

IMPORTANCE Hidradenitis suppurativa (HS) places a significant burden on the health-related quality of life (HRQOL) of patients, many of whom have depression. Resilience can play a role in mitigating the negative stressors, such as the symptoms of HS, on patients' mental health. OBJECTIVE To investigate the correlation among resilience, depression, and HRQOL for patients with HS. DESIGN, SETTING, AND PARTICIPANTS This cross-sectional survey study of 154 patients from 2 referral centers in the United States and in Denmark was conducted from June 1, 2016, to March 31, 2017. Patients were considered eligible if they were 18 years or older and had a visit for HS at 1 of the 2 referral centers in the past 2 years (from January 1, 2014, through December 31, 2016). Patients were excluded if they declined to participate, could not read or write in English or Danish, or had a cognitive disability that would preclude their understanding of the survey questions. MAIN OUTCOMES AND MEASURES The survey instrument included 4 questionnaires: (1) a sociodemographic and clinical characteristics questionnaire, (2) the Brief Resilient Coping Scale, (3) the Hospital Anxiety and Depression Scale, and (4) the Dermatology Life Quality Index. The main outcome of interest was the HRQOL as measured by the Dermatology Life Quality Index. RESULTS All 154 patients submitted a completed survey. The mean (SD) age of the participants was 40.93 (13.5) years; most participants were women (130 [84.4%]), and most participants self-identified as white (139 [90.2%]). The rate of depression among the patients in this study was comparable to those reported in previous studies; 55 patients (35.7%) were classified as having depression, and 32 patients (20.8%) had borderline depressive symptoms. Patient-rated HS severity and the depression score each independently estimated 27% and 10% of variation in HRQOL, respectively. The interaction term for resilience and depression was significant, indicating that resilience moderates depression. Analysis of the mediation effects of resilience was not significant, indicating that resilience did not mediate the association between depressive symptoms and HRQOL. The resilience score was significantly associated with depressive symptoms (regression coefficient a = -0.21; P < .001), and the depressive symptoms score (c = 0.637; P < .001) was significantly associated with lower HRQOL (c' = 0.644; P < .001). However, both the direct association (b = 0.033; P = .86) and the indirect association (a x b = 0.007; P = .87) of resilience with HRQOL were not significant. CONCLUSIONS AND RELEVANCE Patients with higher resilience levels experienced a smaller decrease in HRQOL as depressive symptoms increased. Because the findings suggest that resilience can be taught, there is an opportunity to develop a resiliency training program and investigate its role in stress levels and depressive symptoms, as well as in HRQOL and disease activity.

BACKGROUND:Patient-reported outcome measures are very important outcomes. For specific diseases, health-related quality of life-instruments (HRQoL) are increasingly used to provide data on patients' overall perceptions of the course of a given disease. Actinic keratoses (AKs) are common keratotic lesions that occur on chronically sunlight-exposed skin. Only few studies regarding HRQoL in AKs have been made.OBJECTIVE:In order to be able to compare HRQoL among different countries and cultures, we aimed to translate and validate the Actinic Keratosis Quality of Life (AKQoL) questionnaire into Spanish and quantify the impairment caused by AKs in Spanish patients.METHODS:The AKQoL was translated. Then, 15 patients with AKs were interviewed to ensure cultural adaption before it was tested in one hundred patients with AK lesions at the Melanoma Unit of Hospital Clinic in Barcelona.RESULTS:Validation showed high interitem correlations, as well as a high correlation of each item and the total score. Internal consistency (Cronbach's coefficient alpha) was also high at 0.91 and an alpha value of 0.90 at retest. The test-retest correlation was 0.96, and the intraclass coefficient was 0.98.CONCLUSION:The presented data support the AKQoL Spanish version as a valid and reliable HRQoL questionnaire for the description of AK-related QoL and may provide a method for comparison of AK specific QoL between different cultures and countries.